First, I want to wish everyone a belated Merry Christmas. I hope you all had a wonderful holiday and created wonderful memories. That’s what I have told people the last couple weeks… make beautiful memories. Not social media picture perfect memories though, but true memories. Memories that are more documented in the heart (though it is ok to document them on social media).
This is going to be a long post and some may think I have overshared, but I do want to be honest and transparent with how we are doing. Trust me, I don’t share everything. 😊 By sharing Jeremy’s diagnosis and asking for prayer, we have invited you along on this journey. And honestly I share with you what has been laid on my heart to share. I actually do pray about what to type here before I do. So here it is.
I do get asked a lot on how I am doing. I really don’t know how to respond to people. There is no set emotion or state that I am in that I can tell people. I am crappy (PG version). I am blessed. I am angry. I am thankful. I see so much beauty. I see so much ugly. I have peace. I am hurting. I laugh. I cry. I am grateful for each day. I wake up and tell myself to keep plugging along. I savor each moment I get to spend with my loved ones. I look forward to bedtime because I get to have some alone time. I am trusting God. I am asking him why…why like this? So if I am asked in person how I am doing, I usually smile and say, “Well, you know.” If I have been asked in a text or a message and I haven’t responded, that is why. I really just don’t know how to respond.
Last Thursday, a week ago, we got a call from the doctor’s office telling us that the biopsy came back and Jeremy did not have any of the markers he needed to have immunotherapy. That was hard news to hear. I didn’t really know how to process it. I decided to wait to share it here until after Christmas and when we had had a chance to talk to the doctor in person. We forged ahead and tried to focus on Christmas. Jeremy was feeling badly that he hadn’t gotten me anything for Christmas, but I had told him all I wanted for Christmas was him to be present for Christmas as much as he could for the kids. That was asking a lot of him, I knew, but really that was all I wanted, especially for the kids and their memories. I could start seeing signs of the stupid fluid buildup, but he wanted to hold off because it wasn’t the normal length of time he gets the paracentesis done. Sometimes I wonder for such a methodical, plan oriented guy, how he married and puts up with a squirrel of a wife. Though we are by far not perfect…trust me… we have always been a good team. He keeps me grounded and in check and I help him to think outside the box and not be so stuck on what the instruction manual says. I didn’t push him to get the paracentesis on Tuesday even though I could see the discomfort coming back. But it was Christmas Eve and I didn’t blame him for not wanting to do it. He made sure to get a good nap in so that he could join us by being present in some of our Christmas traditions. This year, those traditions felt more sacred to me. Going through the things that our children look forward to because we have created those traditions was bittersweet to me. Some we had to tweak a little. The Jesse Tree for one. I was going to have to read it to them but they asked if they could take turns reading it. I loved hearing them as they participated in one of my favorite Christmas traditions. We went to the normal Christmas lights display that the kids love walking through, but Jeremy stayed in the truck and watched us while the kids walked around and were ordered NOT TO TOUCH ANYTHING! Didn’t want them getting any germs with sickness being bad right now. Christmas morning, Jeremy has always done something that his dad did every Christmas morning that he remembers fondly. The kids come into the bedroom ready to be released into the living room where the presents are and he will step into the bathroom, turn on the shower and tell them he needs to take a shower first. The kids laugh and usually respond with a “Daddy!!” but know he is joking. This year as I was helping Jeremy out of bed, I asked him if he was ready to go do presents or if he wanted to take shower first because I could go get the water started for him. Apparently I am more convincing as an actor because Eli thought I was serious. So Christmas traditions this year were beautiful and sacred and joy filled but very hard and different at the same time.
Christmas morning was epic for the kids. I really try not to go crazy with presents for them (I do the Christmas shopping. Christmas shopping makes Jeremy very, very grumpy, so I took over that activity once I realized that years ago). We do the “Something You Want, Something You Need, Something To Wear, And Something To Read” for the kids, along with a Santa gift. They get gifts from grandparents and aunts and uncles too, but this year the bottom of the tree was overflowing with gifts courtesy of the women from the organization I worked with along with Jeremy’s former workplace. Normally I don’t like them focusing on the gifts, but this year I was oh so grateful. The kids were so caught up in being spoiled that I know they will have incredible memories of this Christmas despite the memories of Daddy being so sick. Well for the most part. Eli was very aware of it. He made a comment on how his uncle was doing things that Dad would normally do so I know it was still hard on him and that hurt my heart a little, though I am grateful for how my family has stepped in to be there for us. I am grateful for everyone who made a point on loving on us during this season and making it a Christmas to remember in a good way.
Jeremy was able to join my family at my parents’ house though we got him in bed as soon as we got there to take a long nap. He was able to join us in the living room for presents and pumpkin pie…with real unfrozen whipped cream (a running battle between my mom and him). The whole family was ecstatic he was able to be there. He wasn’t running around outside with the boys playing Nerf wars but he was there and that was enough.
Yesterday, we woke up early to get to his doctor’s appointment. I had been trying not to think too much about it. I definitely was feeling apprehension regarding what the oncologist was going to say based on what we knew regarding the biopsy report and what we knew about treatment options. Don’t get me wrong. We still believe that Jeremy can receive healing, but we also believe healing can come through medical treatment and not just spontaneous miraculous healing. We believe in both. Both are possible, but with what we had already learned, we felt he had run out of options in terms of effective treatment healing. One thing I love about Jeremy’s oncologist is that a she is positive and doesn’t want to leave any stone not turned in fighting for him. And yesterday when we left meeting with her, I felt she has not given up on fighting for him and is still doing that. She told us he needs to do another cycle (28 days of this current treatment) before he has a scan to see if it is working. We think the mass in his chest wall looks smaller so we are hopeful that it is helping. She also hadn’t heard from Emory yet, so she was going to pursue that to see if they have any clinical trials that would be open to Jeremy. She said under FDA rules he is only allowed to get immunotherapy based on if two markers are present…of which he has neither. However, there may be a clinical trial he can participate in that is testing to see how patients with gastric cancer without those markers respond to immunotherapy. So she said we are going to start with Emory to see what they have. And if they don’t have anything for him there, we will start searching further out in other places. She would like to have more options in place by the time his next scan is done just in case the chemo is not being effective. I asked her about having drains put in so he doesn’t have to keep going in to have paracentesis done and she said she only orders that for patients who are on Hospice because at that point it is a goal for comfort. The risk of infection is too great and with his compromised physical state, if he got an infection, he might not ever come back from it. Since the goal is to find effective treatment, it is not an option for him. Though I hate that he has to go in so often, I was happy to hear that she’s not giving up on him and is still fighting for him.
So today we are heading in for another paracentesis to give him much needed relief. Specific prayer, other than effective treatment and complete healing, is that he will feel better. He doesn’t feel good at all. He’s fighting, but I see him growing weary. Jeremy doesn’t usually strike anyone as a fighter. He is too likable for that. He comes across as a lover, not a fighter. Usually the fighting is my job. He has told me that it takes him awhile to even realize there is a fight, but by time he does realize there is one, I have usually jumped into the fight and am getting it taken care of it and he is there yelling, “Yeah, take that!” …That last part was me, not him. 😉 But I have been seeing him fight. I see him fighting to not lose hope… fighting so he can have a future with me and the kids. But physically he is tired. Please pray Isaiah 40:31 over him. He needs it.
Again, thank you for all your thoughts and prayers. Thank you to all who have reached out to bless us. It is very much appreciated. Please know that even though I am staying physically close to my immediate support circle, I see and feel the support outside that circle and I am thankful. It means a lot to me.
